Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Kindly asking for help :)

Discussion in 'General ME/CFS News' started by jennifer1, Jul 4, 2011.

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  1. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Sounds like no awareness of the sleep issues of ME/CFS.

    Wendy.. I have many different sleep issues with the ME/CFS (many ME/CFS patients dont have simple insomnia like many depressed patients do) but the main one I have which screws up my sleep is due to it is a severe circadian rhythm disorder in which the hormonal cycles in the body are all screwed up. http://en.wikipedia.org/wiki/Delayed_sleep_phase_syndrome

    "It is responsible for 710% of patient complaints of chronic insomnia.[4] However, as few doctors are aware of it, it often goes untreated or is treated inappropriately; DSPS is often misdiagnosed as primary insomnia or as a psychiatric condition.[5] "

    DSPS needs to be treated with light therapy and melatonin and isnt treated like the more normal kind of insomina at all, the normal insomina treatments arent recommended for that disorder and actually dont work well at all on this disorder.

    The prevalence is "About 0.15% of adults, three in 2,000, have DSPS. " .. Seeing I have it as part of my ME as just one of its many symptoms, I bet a large number of ME patients also have the disorder so that is a false promise you are making there to say you can expect a change in sleep. (unless you can make ones body start producting melatonin and get the other hormones right.. I personally dont think you are going to be able to fix this kind of insomina)

    "Constant feeling of adrenaline"

    Id like to say it isnt just a feeling but our adrenaline is often actually sky high. My adrenaline was so high that they dismissed my first three urine tests as they didnt believe the results. Mine is sky high even when Im going throu a very calm time with no stimulation. Not sure how you would fix issue with the actual body itself (rather then the mind) causing excess adrenaline.
  2. Andrew

    Andrew Senior Member

    Los Angeles, USA
    There is nothing that usually helps or often helps. What we have with CFS (and the other neuroimmune illness) is a lot of small studies and anecdotal reports about things that sometimes help improve symptoms for some subjects but not others. And the general pattern for patients is that with each new promised cure, a bunch of patients try it out and most have no improvements. Some get worse. But every so often one of us gets lucky.
  3. Spring

    Spring Senior Member

    I always distrust people who come with therapies in their first posts.
    All my thoughts are allready been written, so I don't have to make myself angree. So thank you all!
  4. Tulip

    Tulip Guest

    Madietodd - you don't need to explain yourself, it's cool. I'm in Australia where 99.9% of doctors refer to it as CFS as well.
  5. sleepy237

    sleepy237 Senior Member

    Which of the therapies you now practice helped you the most? Perhaps recovered sufferers may help most by sharing their personal experience of recovery? If you have a wide network including professionals I find it difficult to conceive that you are having to ask such questions. If you have been part of the CFS/ME community you forget easily. Good luck.
  6. kurt

    kurt Senior Member

    Syracuse, Utah, USA
    OK, this is a personal opinion and not a 'mod' comment....

    There are CFS and ME patients who have been helped by these types of therapies, I think Wendy deserves a chance. Treatment for anxiety in particular can help a CFS patient deal with the terrible neurological amplification of ordinary stress that we experience. Complimentary therapies can be useful coping strategies for any disease. As long as she refrains from making illegal and unethical claims of these therapies being curative, avoids promoting her own services, and sticks with the 'complimentary' angle, I don't see any problem with her survey, so long as it is a regular forum survey and we all see the results. In fact, I think it would be very interesting to see honest answers from forum members to her survey, see what THAT reveals....
  7. Dainty

    Dainty Senior Member

    MOD: Wendy Turner,

    Your interest in our community has been noted. Unfortunately there are inconsistencies in your story here and information elsewhere that are of concern to us. Please contact me privately for discussion of these matters before participating further on this forum.

    Thank you.
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